mindset (10)

Thoughts dictate our actions.

Not a big deal, right? Control our thoughts – control our actions. Simple enough.

Can I get an L to the O to the L on that one? Easier said than done.

Just bumped into my buddy “Sam” (since I didn’t ask if I could write about him) at the grocery store. Dude had a huge smile on his face, as usual. Sam is a towering guy – 6’+, huge shoulders, bald melon and a beard one only finds in Oregon. Successful real estate guy, grinnin’ from ear to ear when I said “hey stud”.

We talked, and the tone of his voice is the kind that leads soldiers into battle and quarterbacks into Super Bowls. Positive. Upbeat. Fearless.

You know how sometimes a casual conversation can lead to something more? We went to that place. The place where for whatever reason, the guard was down and we didn’t really care who was around us.

Sam lost his mom a few months back. Crazy case of cancer that went through her quickly and took her all too soon. It was easy to see from his body posture and facial authenticity that he really, really, loved his mom. If you only heard him speak a few sentences about her you would know that she was a remarkable woman.

“But”, he said, “I’m thankful it was quick. She didn’t suffer for long”.

Mindset.

He is still hurting. That’s ok. In fact, I’d go so far as to say that’s good. We don’t want to be immune from reality.  But we also don’t want our hurt to overcome our potential and purpose.

Why does this belong on a blog of a guy with kidney disease? Because mindset. That’s why. We need more “Sam’s”. All of us. It’s been said that if you want to fly with the eagles, you can’t hang with the turkeys. Sam is an eagle.

Knuckle bump, Sam. You’re my hero of the day.

the main thing

Ever been on the struggle bus? I seem to have an unlimited ride pass on it the last few weeks.

Don’t get me wrong. Things are good on this health journey. But sometimes, we have so many plates in the air that one (or seven) of them fall. Falling plates suck.

So I met my dad’s doctor (see previous post), and that was good. It’s cool to see my medical team come together. As I’ve said before, I’m willing to try anything to be well. I’ll eat vegetables. I’ll CrossFit like a boss. Heck…I’ll even drink less wine. Not much less…but less in general 🙂

Been doing all of the above. But life. Life has a way of humbling us, and making sure our priorities remain intact. My wife Theresa and I have 4 kids under our roof, and I’ve been beating myself up a little lately about the way I’ve been “dad-ing” lately. Taking care of myself, not the best care of those I’m charged to care for.

Humbled in terms of diet, too. I had the ambitious goal about a month ago to go vegan. What I learned was that, for me, I need to ease into this whole vegan lifestyle. I really like chicken. Just trying to eat less of it as we go to gradually lower my protein intake. This is hard, but not impossible.

But the main thing: joy. What the heck do we make positive changes for if we can’t find some joy. Know what I mean?

So…joy. I found it and was reminded of its importance this evening.  In all places, it was found in an old warehouse while doing squats at CrossFit West Salem. Laughing, making (appropriate-ish) jokes. Doesn’t seem like a big deal, but in all of this – tonight was the best time I’ve had in a while.

I share this to encourage you to find the joy. In the little stuff. Life is heavy, and dwelling on the heavy seems to me to be fruitless. The heavy stuff will find its way to us no matter what. We have to look for the joy.

Early on my health journey, I read something that had a lot of good content and suggestions relative to kidney health. To sum it up, it read something like “what we put in our bodies matters, what we get out of our bodies matters, how we treat our bodies matters”.

Treating our bodies well includes joy, and the pursuit of it. That reminder came just in the nick of time today.

meeting my dads doctor (8)

My dad, Bruce, died in 2010. In a way, I think he was dying for 10 years. He would have bursts of optimism – but after a decade of dialysis and a failed kidney transplant…it would have taken superhuman mental and emotional strength to overcome what he went through. Not sure anyone could have overcome all he was dealt.

Add to that his bout with cancer at the end of his life, that was too much. I remember vividly his decision to forego dialysis treatments at the end. He had been getting radiation (for cancer) and dialysis at the same time. When it came time for him to go to the dialysis – he was so weak that he fell and couldn’t get to the car. Paramedics had to put him in an ambulance, and he wasn’t one for help. I think that when he fell, his mind was made up. This would be his last dialysis treatment, which meant the end.

This began the longest two weeks I can remember. He slowly faded away, leading to a coma that lasted a few days, then his passing.

This experience stoked my fear of PKD. Seeing the way he went and its toll on the rest of the family was something I hoped to never have to go through again. My kids, siblings, wife, everyone I love. I want to protect them from that.

Fast forward to this last week, and my first visit with a nephrologist. I told his assistant that that I was doctor shopping before he came in. In so many cases, it seems we kind of end up with the doctors we’re referred to. With my family experience, I’m not taking that approach. I’m looking for the very best. Then, I met Dr. Makeska.

He came in, super engaging. Answering questions, going through his recommendations relative to PKD. He talked about resources and cutting edge treatments that are currently being studied. Their benefits and risks. I quickly forgave him for being 25 minutes late to our appointment.

Then something pretty cool happened. We made a connection when he asked about my family and my dad. I shared my dad’s story, and he got a puzzled look. He said “what was your dad’s name?” When I told him, he teared up and said “I knew him. I visited him when he was on hospice. He was a good man.”

Dr. Makeska treated my dad toward the end, and my dad had a way with people. He’d make ’em laugh in a beautiful way, even when he was hurting. This trait, I’m sure, led to him bonding pretty quickly with Dr. Makeska – my dad’s doctor. My doctor.

On the practical side of our visit, he shared with me that we needed to do some more tests on my kidney function, and he gave me a target for my blood pressure – 130 over 80. I’m just a pinch higher than that, so there’s some work with diet and exercise that needs to happen.

Looking forward to this, and hopefully giving my family and Dr. Makeska a win by being around a long time while honoring my dad with inappropriate and uncomfortable jokes along the way.

it’s failure. or is it? (7)

One step forward, two steps back. That’s what I’ve heard anyway.

Last week – super pumped about my new diet regimen. After doing a fair amount of research and seeking health for my body in a natural way (via food), I jumped into this whole “vegan” lifestyle. The first couple days – I was sharp. Feeling great, body responding in a solid way.

Then…5 days of h-e double hockey sticks. Feeling lethargic, tired, out of sorts. I will say, however, that I had my first “good news” since being diagnosed with PKD – and that was a self administered test of my body’s ph balance…I was alkaline – barely (7.25) – for the first time in my life. This is excellent news, and I was encouraged that with discipline I could get there.

Here’s a nifty blog post about the body’s ph, and why it’s important

With that said – I gave myself permission to not be vegan for a few days. Like any other significant change we might put our body through – working out, sleeping more, etc…it will take some adjustment, preparation, learning. So give yourself some grace if this a change like this is in your future. Adjusting isn’t failure. It’s adjusting.

This week, I’m excited to talk with a nutritionist and to have my first appointment with a kidney specialist. I see my treatment as a triage approach between western treatment, naturopathy and diet. In a sense, I’m “dating” all of these potential providers right now. I’ll go wherever I need to go to get the best treatment for me. I’m not settling for who’s closest. I’m looking for who’s best.

Looking forward to getting back on track, the right way, and learning the best way for my body to be in health.

what the (6)

I love meat. And salt. Turns out, those are the two things I shouldn’t have. Like ever. Well played, God…well played.

Now what? Veggies and fruits 24/7? I guess so…let’s give it a go.

Also, a week ago I had surgery. Not the kind where they filet you open and move things all around (thank goodness). But the kind that takes a few days to recover from, so I was laid up. I’ve always really envied those that can just kick it. Sit on their can for hours, staring out a window, being perfectly content, kick it. That’s not me, so being laid up was a bit of a bummer.

Had to have something to pass the time, so I read. Read blogs about people like me, getting their ideas. What worked, what didn’t, what they wish they knew. Also, blogs about blogging. I hope to get better at this – it’s a great release, and a few of my friends have read what I’ve put out there. It’s pretty therapeutic, too. Healing in a way.

I also watched Netflix documentaries about food. All the documentaries about food. And how terribly I’ve treated myself the past 38 years. Not sure if Netflix is trying to turn us all into vegans, but at least a few people must have succumbed to the temptation to try it (like me).

“let food be thy medicine, and medicine be thy food”
-Hippocrates

Today was my second day, certified vegan(ish). Avocado and a cucumber/celery/pear/lemon/carrot juice for breakfast. Butternut squash soup for lunch, and brussels sprouts with stir fried (in coconut oil) sweet potatoes with onion and jalapeno for dinner. Wasn’t bad, except I felt weird. I could feel my stomach looking at me with puppy dog eyes as I was traegering chicken legs for my kids.

So here I am, two days into the journey of being veganish. Apparently it’ll help keep my blood pressure low, stress on the kidneys in line and will even help me regrow my hair.

*Just kidding about the hair, but a guy can hope

so that’s why I felt that way (4)

I felt bad. All the time. My diagnosis helped connect some dots.

Kidneys filter the junk from our blood, which in turn helps us remain energized. It’s like a fuel filter in your car – when it gets clogged, the car don’t go no mo.

I was lethargic, tired, not as sharp as I knew I could be. These symptoms are easy to attribute to age if you’re old…but I’m not, so I didn’t go there.

After my diagnosis, I went on a quest. I needed to get more info, but (call me crazy) my trust in conventional western medicine is lacking, so I Googled “natural kidney disease cures”.

This was about a month ago. During my search, I came across the first comprehensive kidney disease specific naturopathic approach to potentially healing me. Aptly named beatkidneydisease.com,  it’s gotten me into a regimen of juicing, making homemade hippy teas that taste like earth and a host of herbal supplements. If you run into me and I smell like patchouli, you’ll know why.

I think it’s working. I sure do feel better. Diet is a huge part of it, too. More fruits and vegetables, less protein, sodium and caffeine. I do love my coffee – but not to death.

I have my first appointment with my specialist (western focus) late February and my naturopath in late May. I’m actually looking forward to getting my labs back to see if there’s been any improvement, and to making any necessary adjustments along the way.

There’s a lot of reason for hope, and the journey is proving to be rewarding already.

bad decisions (3)

Being diagnosed with PKD has, in many ways, been a blessing. Not all the ways, but many of them.

For a long time, I felt like I wasn’t giving my body what it needed nutritionally speaking. Feelings of lethargy and general slothiness were common. Sure, I’d go to the doctor from time to time and mention it…but the answers I got were usually along the lines of “you probably aren’t getting enough sleep”, or “eat more fruits and veggie.” These answers missed the mark.

With the diagnosis came a turn to Google to learn the “do’s and don’t’s” relative to kidney health. I plan on engaging a nutritionist to really dial this in – but with the basic knowledge that my kidneys do well with some foods and not so well with others has been a game changer.

Until Friday. We were in Seattle for a couple of days, and eating out is something we enjoy doing while on the road.

Friday, I decided it would be a cheat day of sorts. My uber supportive wife, Theresa, said she felt like Cheesecake Factory. I thought I’d get a salad, and all would be well. Then the menu came. Nobody gets a salad at Cheesecake Factory.

I had all the things. Buffalo wings for apps, baja tacos, and a few bites of Mrs. Williams’ chicken tenders. And the cheesecake. Ermegersh.

Friday afternoon, as the sodium, sugar and protein worked its way through my little kidneys that could…I wanted to curl into a ball and croak. Energy was completely gone, patience had evaporated, reason in thought was a thing of the past.

Fast forward to Saturday. Home. And the Jack LaLane power juicer (which has become a staple in my daily walk with this). A cucumber, carrot, celery, apple and lemon juice was the first thing I made. I could literally feel my body come into normalcy as I threw this thing back the way a college kid shotguns a Keystone Light.

I recently celebrated my 38th birthday. With a little seasoning has come a maturity and desire to think beyond a couple days from now – particularly relative to my health. And now more than ever I’m realizing that if I put junk in, I can’t expect to get anything less than junk out.

I guess the moral to the story is this: eat good stuff. All the time. Listen to your body’s cues and follow its lead.

generational (2)

When I was 7, my grandpa Ollie died. Mind you, I was 7. I knew my grandpa was dead. And I knew that my dad was devastated. I remember him talking about “kidneys” and how his and grandpa’s weren’t all that strong. But I didn’t really get what was going on, or how that time would have a life long impact on me. My kids.

Fast forward about 20 years, and my dad was on dialysis. He had been fighting polycystic kidney disease for about 10 years at this point, and he was sick. Really sick. I was devastated…but he told me, I think to comfort me, “don’t worry about me”. In my mind, I went back to how devastated he was at the loss of his dad. My grandpa. How could he tell me how to feel when he had so openly grieved the loss of his dad of the same disease? It felt like a double standard, but on hindsight…it was his way of helping me through it all.

11 years later, at age 37, I was diagnosed with the same disease that had taken my dad and my grandpa. To say that fear gripped me was an understatement. Newly remarried, responsible for the emotional well being of 6 kids. Mortified to the core.

The tricky thing about polycystic kidney disease is that it’s genetic, and generational. We learn how to deal with it from those we love. Those that I knew with it were dead.

Through a lot of prayer and conversation. Seeking. Googling. Doing all the things I knew how – the words “my dad’s story isn’t my story” finally started to sink in.

So begins the journey – to let my story be different than that of my dad and my grandpa’s. This little blurp is about that today. I don’t know who’s going to read this or when, but if you’re at some point dealing with a multi generational booger, pick that sucker. It doesn’t belong with you. It doesn’t belong with me.

here we go (1)

November 13th, 2017. Sitting in Dr. Barnett’s office – I learned that I had polycystic kidney disease. The same disease that took my dad and my grandpa from me.

I was shocked. Scared to death. But I learned…this isn’t a death sentence. It may just be a key to life.

This blog is about my journey. It’s less for you, more for me. But I think that will become for you. Does that make sense?

So…come with me. Let’s endeavor to see what recovery and fullness of life might look like. For renals.